This Is MS Multiple Sclerosis Community: Knowledge & Support

We have talked about sending letters to many doctors about CCSVI, but after reading a post today about one of Dr. Simka's patients I thought maybe we should also contact some 'ultrasounders'. In our area there is one big company that actually goes to offices all over. I sent the following email to them -

There is a new MS theory that is being touted as perhaps the cause/cure for the disease. Please take a look at this news article that the Canadian news program W5 (our 60 minutes show but actually older) did for an overview on CCSVI. http://www.ctv.ca/servlet/ArticleNews/s ... 1/20091121

The originator of this theory (but other doctors have been looking at MS as a vascular disease for 60 years, but have been rebutted) Dr. Zamboni has developed a specialized ultrasound technique for detecting this. He did go to Buffalo, NY and taught the technique at the Jacobs neuro center, where they are in the middle of a huge study. This condition can also be seen on MRV's (MRI's of neck veins), but the doppler is the best for seeing the 'backflow', where they actually see blood going 'up' veins back to the brain.

Another doctor working on perfecting this technique is Dr. Simka from Poland.

Here is a link for more details on the procedures -
http://www.voyager2.com.au/index.php?op ... &Itemid=10

There is a link to this on that page but here is the latest paper on using ultrasound-
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This is going to be huge. Already on the internet on many forums people keep asking where they can get tested see http://www.thisisms.com/forum-40.html.

UB is supposed to announce the results of a large study they are doing any time now. Once those results are released if they come out as expected I believe the demand is going to go crazy.

Neuro's aren't as enthused about this right now as others, but some interventional radiologists/vascular surgeons are treating people already.

If you have any more questions or would like to do any testing please feel free to call.

----Can't hurt to try and get more professionals enthused.

Let's hope it reaches the hands of a good salesman. Then every doctor will know about CCSVI and will have a new US device on his desk!!!

does anyone have the latest news from buffalo

I didn't even think of it that way, you are right though. The ultrasound companies are contractors, if they get the GP's thinking and ordering the tests (as opposed to neuro's...) wow.
When my doc suspected MS 10 years ago before he sent me to a neuro the first thing he did was order an ultrasound of my legs to make sure my leg problems weren't blood flow related. I'll have to mention that to him next time, he just had the tests done on the wrong end of my body! LOL

Good work, jay123. My only comment is that perhaps it is too early to say "cause" or "cure", but maybe say positive treatment instead. The cause or cure claim might anger MS neurologists if they get wind of this.

ozarkcanoer

This has been my contention, that we just circumvent the neuros period
IF they are reticent to proactively investigate. While I am loathe to "doctor shop", fact is one must do what one feels is one's own best interests, and that of one's family. If that involves going through GP or other means, well by all means!

One thing still hanging in the air here that is relevant, is while I think thats a great idea to get on board with, the question still remains as to the capabilities of conducting said tests on outdated equipment with little training. If the UT at Stanford can't *get it* with Dr. Dake coming back with all the info he garnered in Bologna, how is the corner UT guy supposed to find it? If as I posted before, even qualified MD's conducting UT's cannot conduct normal established tests properly, how to train for the fine tuning involved in establishing reflux on the most modern equipment we have?

These sites like Buffalo have a leg up on all of this, obviously, they were trained by the people who perfected the art themselves. The issue to me is very clear, we need to identify the reflux as it happens, not just point to a constriction and fix it. But how to do that if the UT techs CANNOT do it?

What I'm getting at here, is we need that training that they have where it IS working where it IS being seen, to be replicated, not just testing for the sake of testing. Can you imagine say 1,000 totally uninformed MS patients, who then stampede to their local UT clinic, requesting a UT of the veins of the neck. Okay say you get 10 different operators, with 10 different methods and interpretations, giving back 1,000 detailed reports and say 70% are correct in identifying problems, and 30% aren't. And those %'s are being very generous.

You now have 300 people who now "know" that there is nothing wrong with their veins, and go back to their doctor or neuro, who says, "Told ya so" and gives them another brochure for the latest drug of the year.

Yes, that is an exaggeration with many unknowns of course, but extrapolate the hypothetical out into the millions and what happens? Chaos.

So not totally against it per se, and would gladly assist in any way I can and start working in my own area for just that, but the equimpment shortcomings are as bothersome as the training issues too...

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I called my local radiology company and asked the woman who answered the phone if she was familiar with CCVI and doing an MRV to see the blood flow...what? Anyway, I went on their website and sent them all the information on this subject. They'll probably ignore me to.

Good points, all. It is all about money, and where there is a vacuum, there will be a big sucking sound. CCSVI/MS actually creates a huge new industry base; trans-cranial Dopplers, BigT MRI, rehabilitation, new tax base when we get working again, and on and on.

Everyone in the slot assigned. Man, how about some spherical thinking?

The neurologists will still have a lot of work to do in the re-wiring, detoxification, and so on. They have had 50 or sixty years to figure it out, and haven't. Over to the vascular guys, and interventional radiologists. I think it was SandyK who asked her neurologist why, if MS was an autoimmune disease, was she seeing him, and not an immunologist. Why now, would we be interested in either to help us solve our jugular problems? Any doctor of any ilk would be grossly negligent to ignore vein blockage from what is arguably, our most important organ.

Mark - I believe that any radiologist with a scintilla of medical curiosity can do the screening (using Simka/Zamboni/Haake protocols). The private clinic here in Vancouver reports that they have found VI in 100%, though, they could not necessarily pin-point it to a stenosis, but they don't do trans-cranial Doppler. They got Haake's software, and picked up the iron in the MRIs. Further, they have just dropped their prices quite dramatically. Compassion? or smart business? They are also doing free referrals to the radiology for people with MS. I get a sense that things are moving very quickly.

I say we go back to the MS clinics after we are liberated. The MS clinic here called and gave me an appointment for February. Since we are getting outta Dodge for the Olympics, and I don't care to hear about his Valentine's Day plans, I'm going to cancel.

Besides, I got an e-mail from Dr. Simka this AM, that he will do me in May. Between now and then, I am going work as hard as I am able to get it done here at home.

/babble

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My name is not really Johnson. MSed up since 1993

I'm hoping the papers I referenced will be enough to at least get the ultrasounders started, perhaps they can contact Dr. Zamboni if they get confused with the information.

Johnson... That is so cool that Dr Simka gave you a slot in May !! He has the most experience outside of Italy and Dr Dake at Stanford. I hope we hear some formal reports from Dr Simka on his patients soon.

ozarkcanoer

They sure are, in certain areas, and stagnant in others. My thrust here is that there are inherent shortcomings already in consistency of training and skill levels, which of course is not for us to address but gives a sneak peek of what lies ahead. For instance, our dear Erika wrote:

Well, all/many doctors use Dopplers but there is big difference between me and Bill Gates. Only one thing is the same, we both use PC.

After Dr. Simka I had 4 Dopplers in Slovakia - all negative - but I wanted to explain the doctors the problem, now they know me and I can send them many interesting e-mails.
I had 2 CTs with contrast - nothing.
I had 1 MRV with contrast - nothing.
I was not disapointed because I knew it.

I hope many new members will read this.
Erika

See what I mean? I had exactly the same experience, the sonographer at Stanford insisted there was nothing there, everything normal. Now I expected to hear that, having studied here much before going there, and it was water off a ducks back, no panic at all, but imagine if I just came off the street, all excited, with the papers and instructions, yet heard the same thing? Dejected wouldn't begin to describe it. And that is the mountain we are up against, the "tiny bit of knowledge can be a dangerous thing" syndrome.

I'm fully on board with the idea (of COURSE) of spreading the info as far and as wide as possible, but nuts/bolts rubber meets the road, we have a grand canyon's worth of an empty hole to fill. Remember it's not just papers to read, but *experience* with the proper equipment, which we are sorely lacking here in the states in both areas.

My heart is with the UT right now, all discussion of MRV's aside, because it's FAST, it's CHEAPER, it covers the highest number of people in the shortest time, and even the uninsured can scrape up enough if need to be to see what's going on and go from there.

Gotta take the kids to swim lessons now so will come back later would love to talk about this some more...

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Thanks ozarkcanoer! I'm feeling very confident now, and really looking forward to the future.

Mark - I get what you are saying. I have to feed my brood pretty soon, but will be back later too. We're both on Wet Coast time (though we are frozen here right now), and I stay up late.

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My name is not really Johnson. MSed up since 1993

Hey it's been fun playing Mr. Mom all week with my darlingest monster, which I might add, I have learned to harness her energy for my own nefarious purposes. Look, I KNOW MRV is the default shunt here in view of the dearth of qualified sonographers with the proper training. I think that is sad too that we have to "resort" to the more expensive and time intensive and exasperating test (for some), than the kick back and relax, turn your head that way, now the other way CAKEWALK that a UT is. Frankly I think it's a cop out to just dump everyone that can afford it or has insurance or a rich uncle into an MRI tube and everyone else can pound sand or wait in line for a study. Yes, that's pretty much the way it always is, but I for one am not content with giving cheap answers like "MRV, simple!". Not sure what the going rate is for those things but it aint cheap.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Hey Mark, I've been doing Mr. Mum for almost two years, and I am secretly thankful for the disability excuse. There has to be an upside to it, right?

I see where you are going with the Doppler vs. MRV, and have to agree. I think that will change once the insurance companies (and our provincial health plans) figure it out.

There is a private clinic in Vancouver, BC doing the MRV, and (not trans-cranial) Doppler for $1950 CDN (~$1850 USD). 2 weeks ago, they were not even doing it. Last week the price was $2300, so it is getting cheaper... I have a credit line, and figure that I can make that back in a week, if I can get back to work. It's danged hard for those that have not even credit though. That is something that I keep thinking of for when I am "liberated", and have the energy - advocating for the financing for those who are frigged financially.

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My name is not really Johnson. MSed up since 1993

and I do think if we get the word out to enough ultrasounders that the demand for training will be there. Then we have stimulated the economy a little more by creating a need for a new business! Maybe we should go to Obama and say instead of building this road with your stimulus money we need a bunch of trainers!
Seriously though if these ultrasound companies see the need for this, they will see the dollars they can make, they will figure out how to get the training. And if the GP's see the feasibility of all this, they will start ordering the ultrasounds and start getting their piece of the pie. Why do you think the neuros are so against this?

Follow the money!